You Can Now Get a Disability-Inclusive Paper Doll Set

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Matlida Jane Clothing includes a paper doll set for girls of all abilities.

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How to Make Technology More Inclusive for People With Disabilities

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Recently I got to hear a very sharp speaker, Jeff Kline, at a national conference on best practices. He is at the cutting edge of using technology to unlock the potential of people with disabilities. The Program Director of Statewide Electronic and Information Resources Accessibility at Texas Department of Information Resources, Kline is also the author of “Strategic IT Accessibility: Enabling the Organization.”  Before government service, Mr. Kline managed IBM’s Worldwide Accessibility Consulting and Business Transformation initiatives. His 26 year IBM tenure also included management in industrial design, software development, and system usability.

Personally, I am a disaster when it comes to technology. But it is a lifesaver for many people with disabilities. It can help a lot of people with disabilities excel and contribute to society. Thus, I asked Jeff some questions, and got some very helpful answers.

1. What is Information Technology(IT) Accessibility and Inclusive Design?

a. IT accessibility means that people with disabilities (PwDs) can perceive, understand, navigate, and interact with information technology, allowing them to participate equally in the economic and social aspects of society. It also has benefits to others, such as people with changing abilities caused by aging. Inclusive Design ensures that products and services are accessible and usable by everyone, including PwDs.

2. IT has become an integral part of today’s society. It touches nearly every aspect of daily life. Can you describe some of the challenges that IT presents for people with disabilities?

a. For example, blind individuals rely on an assistive technology called a screen reader to interact with a website or application. The screen reader speaks what is displayed and identifies each element on the screen such as a link, or a picture, table, radio button form field, etc.  If the website or application is not coded to include accessibility specifications, the assistive technology cannot identify and read these elements to the user in a meaningful way, rendering the site very difficult, or in many cases, impossible for a blind person to use.

b. Individuals with mobility impairments may use other types of assistive technologies such as head trackers or mouth sticks which also rely on proper accessibility coding. Without captions in videos, Deaf users have limited access to video information. Despite significant progress, many manufacturers and software development organizations still do not understand, plan for, design, or develop their technology with inclusive design in mind.

3. What are underlying reasons why so many IT products and services are not fully accessible to PwDs?

a. While technology can still be a challenge, particularly for large “legacy” offerings where the original code may have been created before accessibility criteria was required or understood, there is now a robust body of knowledge and tools for developing and delivering accessible offerings. The underlying reason I see is the lack of commitment, culture, policy, and governance structure within organizations to put policies in place that consistently drive the development of accessible or inclusive products and services.

4. You’ve talked about the challenges for PwDs and the underlying reasons for inaccessible IT. Are there any other impacts that our readers need to be aware of?

a. Inaccessible or non-inclusive IT creates barriers to education, training, employment opportunities, online government services, social media, and other aspects of life for PwDs that many of us take for granted. Additionally, public and private sector organizations also must realize that IT accessibility barriers are considered discriminatory under the Americans With Disabilities Act (ADA), and there has been a strong uptick in IT accessibility related lawsuits. The US Department of Justice is more frequently intervening in these lawsuits on behalf of plaintiffs.

5. Can you tell us a little about your role within Texas state government, and what is being done there to close this broad gap of making IT accessible to PwDs?

a. My role is to provide leadership, guidance, and oversight in IT accessibility to over 170 Texas state agencies and publicly funded universities, to help facilitate the development, procurement, and use of accessible IT.  Responsibilities include rulemaking, policy development, consulting, outreach, and accessibility services and information.

Additionally, I am deeply involved in the integration of accessibility criteria into our state IT procurement processes to help obtain more accessible products and services from the vendor community. For our vendors to be able to consistently produce and provide accessible IT, they need to consider IT accessibility at a strategic  level, so we have recently implemented a new step in state IT procurement using the Policy Driven Adoption of Accessibility (PDAA) model developed by myself, my counterparts in Minnesota and Massachusetts, a group of state CIOs, and the National Association of State CIOs (NASCIO). The model requires vendors to complete a self-assessment at the beginning of the procurement process.

The self-assessment calculates the maturity of their IT accessibility policies and programs using PDAA’s maturity model. Our customers can use the results to gauge vendors’ abilities to build and report about accessible products and services. Most importantly, we want all vendors to use the assessment results as a guide for implementing accessibility practices and policies within their organizations, ultimately resulting in more accessible products and services in the long term.

Want to know more? Buy Jeff’s book on Amazon.

Learn more at RespectAbility.

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Meryl Streep Calling Trump Out for Disability Bias Should Be Just the Beginning

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As a woman with a disability, I was deeply moved by Meryl Streep’s speech at the Golden Globes. Thank you, Ms. Streep, for acknowledging the discrimination people with disabilities face, including from our country’s own President-elect. When the person who will soon occupy the highest office in the land openly mocks people with disabilities, it’s no wonder we have incidents like the horrific attack in Chicago, and so many others that don’t result in adequate media attention or justice, like the rape of a mentally disabled football player by his teammates. As a domestic violence survivor and violent crime survivor, I know all too well that people with disabilities are far more likely to be targeted for hate and harm based on who we are. Yet hardly anyone talks about it.

Last night, Meryl Streep took a step towards changing that. Her words have the power to start a national conversation about disabilities and ableism — a form of prejudice that is just as insidious as racism and sexism but far less acknowledged. And so I’m hoping last night will be just her opening salvo, and that she will continue to learn about our issues and help amplify our voices. You see, Donald Trump is poised to do far worse things to people with disabilities than make fun of us. Our health care and our lives are at risk if a number of his stated goals come to pass. Millions of people with disabilities could lose health insurance if the Affordable Care Act is repealed, and the high-risk pools he proposes for people with pre-existing conditions have historically been disastrous, with high premiums, low lifetime caps on funding, and multi-year waiting lists to get any coverage at all.

Trump’s plans for Medicaid are even worse. Currently, millions of people like me receive funding for personal care aides through Medicaid home and community-based services. I use a power wheelchair and need help with daily tasks including dressing and bathing but am able to live independently in my own house and work nearly full-time thanks to a Medicaid waiver. If Medicaid is privatized or changed to block grants, home care funding would almost certainly be cut, endangering the lives of people with disabilities and forcing some of us into nursing homes. Should I, a 30-something Stanford University graduate, editor, writer, and blogger with an active life have everything I’ve worked for ripped away and be trapped in a room next to a 90-year-old with Alzheimer’s? That’s how Donald Trump could harm people with disabilities, and it’s a lot worse than some mocking hand gestures.

The 2016 campaign was the first time disability issues ever got more than passing lip service by a candidate. Hillary Clinton actually had specific plans and policies intended to help improve health care, education, and employment for people with disabilities. She included speakers with disabilities at the Democratic National Convention and on the campaign trail. Many in the disability community were especially crushed when she lost, as we had tremendous hope that finally we would see steady and substantive progress towards equality.

Although Republicans have a history of greater support for disability issues than one might expect — the Americans With Disabilities Act and ABLE Act both had wide bipartisan support — they were mostly silent this election, except for Trump, who mocked us, and whose history of ADA violations at his hotels shows his lack of concern for accessibility and equality. Unfortunately, our needs are often perceived as expensive, but we can contribute so much to society when given the opportunity.

There are so many issues on which Ms. Streep could be an advocate for people with disabilities. Besides health care, there is police brutality; we often discuss the disproportionate number of Black people killed and beaten by police, but did you know that 60-80% of people killed by police have a disability? Deaf people are shot for failing to obey commands they couldn’t hear. Mentally ill individuals are killed by police after family members called asking for help to take them to a hospital. People who are poor and/or of color and have disabilities tend to have less access to education and health care, and can end up in the school-to-prison pipeline or homeless.

Employment is another critical issue people with disabilities face. I’m fortunate enough to have a job, but I’m in the minority; less than 27% of people with disabilities aged 16-64 are employed. Society may stereotype us as incapable of work, but that’s simply not true; a recent study showed 68% of people with disabilities are making efforts to become employed.

The biggest barriers we face are attitudinal. After graduating from Stanford, I was the last among my friends to find a job. I got interviews with several companies, but their enthusiasm magically evaporated upon seeing my wheelchair. I’m currently an editor at The Mighty; while I love my job, I’ve found that I usually have to work in the disability field to be treated with fairness and understanding. I wish I could expect and receive the same from any company.

While we’re on the topic of employment, there’s a particular issue Ms. Streep is in a unique position to address: the lack of opportunities for actors with disabilities in Hollywood. A report by the Ruderman Family Foundation shows that only 1% of TV characters have disabilities — and out of that 1%, 95% are played by able-bodied actors. This problem is pervasive, and as the record holder for the most Academy Award nominations, I’m sure she has noticed it, but she may not have considered the implications. You see, although actors with disabilities can’t get work, actors without disabilities playing people with disabilities tend to receive dozens of awards and nominations. In fact, 14 of the last 27 Best Actor Oscars were awarded to actors without disabilities playing men with disabilities or serious illnesses. The disability community refers to this as “cripping up,” and it’s part of a long tradition of usually-white actors co-opting the stories of minority groups instead of supporting people from those cultures in representing themselves.

People clearly want to see movies dealing with disability, and these films have the power to transform societal perceptions and promote understanding. So why not cast disabled actors instead? With the wide availability of CGI, even a character who acquires a disability during the course of a movie or TV show can be portrayed by an actor with a disability. One day, playing a character with a physical or developmental disability when you don’t have one should be regarded as offensive, just like blackface is today. Ms. Streep and others in the industry can help by publicly praising actors with disabilities and advocating for well-developed, non-stereotypical characters with disabilities in film and TV. The TV show “Speechless” is a great example, and we need more like it.

To Ms. Streep: your words were a tremendous gift to the disability community. Now, I hope you will help us open that gift and transform it into real change, so people of all abilities can be respected and treated with equality. Please take the next step — or ramp — and reach out to activists with disabilities like me. Even with a man who mocks people like us in the White House, together we can make a difference.

Follow this journey on Free Wheelin’.

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To Meryl Streep, From a Young Woman With a Disability

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Meryl Streep’s Golden Globes speech left me in tears. It isn’t very often that people with disabilities are showcased, or even included in, activism or advocacy. To have such an amazing actress use her huge platform to stand up for those with less privilege was so powerful.

I know there are lots of amazing people and organizations who work really hard to advocate for people with disabilities, but the activism community as a group often doesn’t acknowledge disabilities in the context of oppression. People with disabilities, both physical and mental, are still widely discriminated against and often targeted as victims of crimes or bullying. People with disabilities make up nearly 20 percent of the US population, and we’re the largest minority in the world. It’s also the only minority group anyone can become a part of at any time. With such a large, diverse group, it’s baffling that we get overlooked so often.

So to Meryl Streep, I’d like to say thank you. Thank you for using your privilege to fight for those who are vulnerable. Thank you for showing a disabled young woman that you are ready and willing to fight for her and anyone else who can’t fight for themselves.

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To the College Students Who Ask If I'm OK

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Dear College Students Who Ask If I’m OK,

I know you mean well, but I’d really like to continue heading to class. When you ask if I’m OK, I may slow down a little because I’m wondering how long this particular interaction will last. Will you believe me at my first “yes,” or will I have to repeat myself? Please don’t ask me if I’m sure. When you ask that, it makes me feel like you don’t think I know my own body. I know my own body. I’ve lived with it my whole life.

To the last guy who asked me if I was sure – I’m sorry. I don’t usually yell that second assurance. I think it was the addition of the word “’cause” before I interrupted you, that caught me off guard. I keep wondering what you were going to say. I can’t help but think it would have been something like, “Are you sure, ‘cause you don’t look OK.” You would point out that my left heel wasn’t touching the ground. I know that’s what you noticed, because you were staring. The askers always stare.

I wish I was flattered by you thinking that the way I walk is a result of a physical injury, because it tells me that I can at least “pass as normal.” Injuries heal, after all. But my disability is permanent and I will never just magically walk like you. I had surgery just to get to this point, and yet I’m still not “normal enough.” When I’ve worked so hard to feel and look like everybody else, your questions get at a deep insecurity that my disability is all that strangers see.

So while you may walk away feeling assured you did a good thing, I’m often left far behind you, trying not to cry.

When you ask, “Do you need help?” I’m not sure what you would do if I were to say yes. Because it would be hilarious, I sometimes imagine a stranger giving me a piggy back ride or carrying me in their arms bride-over-the-threshold style. It would be nice to get around campus faster. But maybe you just mean carrying my backpack for me, and I’ve got that covered.

Sometimes when you walk away, I wonder why you asked me. Other students use crutches or a cast shoe when they are recovering from an injury, and since I don’t use either, I would think that’s indicative that I’m OK, or in your eyes, recovering.

Sometimes I wonder why I haven’t seen this happen to other students who have a more exaggerated walk than me. I think it goes back to the fine line of “passing” as someone with an injury. I hope it’s not because people with more extreme conditions make you uncomfortable.

In a way, it makes me feel nice to know I don’t scare people off. In another way, it makes me worried that there are other disabled students who aren’t looked out for at all.

I’m doing more than OK, because I have friends who accept me as who I am and I continue to meet people who will. A lot of people have done so with no questions asked. When friends do ask why I am the way I am, it is out of genuine curiosity rather than pity or concern. I don’t mind answering their questions. I often find it funny that my good friends take so long to ask.

So if you’re wondering if I’m OK: I’m doing great, how about you? I know college can be rough. I hope there aren’t little things that get you down. Now if you’ll excuse me, I don’t want to be late to class. See you around.

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Image via Thinkstock.

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When Someone Calls Me ‘Wheelchair-Bound’

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It’s very easy to look at a person sitting in a wheelchair and just say, “Oh they’re wheelchair-bound.” They’re just pointing out the obvious, right?

Nope. I’ve discovered since I got my first wheelchair, “wheelchair-bound” isn’t really true. For one thing, a great many people I know with wheelchairs can walk, just like me. It’s true that I can’t walk far, but indoors on nice flat smooth surfaces I can get to the bathroom or kitchen. Some days I can even do it without the use of a cane. I still relish these little moments of mobility. It’s been a long, hard road from accepting my first walking stick, to graduating to crutches and now to the final step; into a wheelchair.

The wheelchair isn’t something I’m trapped in. It’s something I use to give me back some of the mobility I have lost. I was terrified the day it got delivered to my house. I cried over it for days… then I actually used it outside.

It was exhilarating. Before, even on crutches, by the time I got to the end of the street I was exhausted; my arms and back were hurting from the crutches, my legs were just plain hurting and what tiny bit of energy I had to go out was gone. This happened every time, even when I was only a few minutes away from the GP! This time, I got to the end of the street… and I still felt like I could stay out! I didn’t feel like crawling back to bed.

My partners push the chair for me outside of the house. I discovered when you leave the house in a wheelchair… the world is not flat! Not a single pavement is actually flat; it’s all a sloping, bendy, bumpy mess. The ramps to get you from road to pavement are nowhere near as smooth as they look from a walking person’s point of view. When you become a roller, those smooth ramps look like huge walls! The nerve issues with my arms mean I just don’t have the strength to push myself that much. I tried a few times, and hurt my arms desperately trying to stop myself careening into the road because the pavement was slanted!

I can usually take over for a little bit when we enter buildings with nice flat surfaces. It’s not much, but having that little bit of independence is amazing (plus, I really like spinning in circles and reverse parking…) I’d been looking at the wheelchair all wrong. To me it was a sign that my mobility had gotten so limited, I couldn’t even use crutches anymore. In reality, it was a device that would improve my mobility and give me back some of the independence I’d lost as my conditions advanced.

Unfortunately, people’s perceptions of wheelchairs tend to put a dampener on my newfound joy. Because they think of the phrase “wheelchair-bound,” if someone sees me move my legs, I get dirty looks.

A few years ago, I fell down a flight of stairs. This resulted in a tiny fracture in my sacrum. For years it didn’t cause many problems, and sorting one back pain from the others is just overly complicated. However, starting about a year ago I began getting extreme pain at the base of my spine that lances horribly down my legs. I can fend this off, but only by standing and stretching. Even with that, if I leave it for too long, I have to be carried to the sofa to lie down. Then over the course of the next few hours I can slowly (extremely slowly) start moving my legs again. It’s incredibly painful, and the longer I sit the worse it gets.

So if I’m getting dirty looks for moving a leg… well you can imagine when happens when I stand up. Even when I’m receiving help to stand and I’m clearly in pain! Even as I am now, having become an “I don’t care what anyone thinks” woman, I still stay sitting far, far longer than I should out of fear of people seeing me stand and passing judgment. Every time I’m out of the house in the wheelchair and I need to stand, images flash through my head of long standing internet-based jokes: i.e. the woman rising from a wheelchair to get a bottle, the text reading “There’s been a miracle in the alcohol aisle!”

The phrase “wheelchair-bound” gives people the idea that every single person in a wheelchair is utterly unable to move their legs, let alone stand. But that doesn’t ring true for so many of us. Out of all the wheelchair users I’ve met, only one cannot actually move his legs at all. Over 20 people I can think of right now are able to stand for varying degrees of time, though they make regular use of a wheelchair. The sad fact on top of all this is that most of these people have been called fraudulent and insulted or verbally attacked by strangers who saw them stand.

I’ve noticed that being in a wheelchair has a habit of giving people leave to talk about me as if I’m not there. People will talk to my partners about me, literally right over my head, as if I’m not there. Even if the conversation is focused entirely on me, they’ll talk to them. More than once I’ve asked the driver to put the ramp down for me to get on a bus. On several occasions the driver has then asked my partners if they can just get me on without the ramp. Usually Vanessa is good at telling the driver to get the ramp down (which shouldn’t be needed as the ramp is there for safety reasons!)

On one occasion the driver ignored my protests of needing the ramp, and said he could get me on even though I was saying I would like to do it myself. He came behind me tipped my wheelchair backwards and shoved me onto the bus with no ramp and considerable force. My chair is not weighted or positioned to let me lift up my front wheels. It’s a lightweight chair, so it’s also a touch shaky. It was the best I could afford and I love it. It just isn’t built to do wheelies and hasn’t got very good shock absorbance. Afterwards, a few people came up (to my partners) to say how nice the bus driver was. Meanwhile, I was still shaking.

Because he saw me as “wheelchair-bound,” the driver decided I couldn’t make decisions about my own safety or mobility. He decided he could take control of my only form of mobility and tip me backwards against my will. Which is terrifying on its own. You know when you’re leaning backwards on chair, supported only by two legs and it feels like you’re falling suddenly? That was the feeling, but worse. After that I was roughly shoved onto the bus, which really hurt. I was also expected to be thankful that the driver was willing to do this for me.

People seem to think they can touch and move my chair without asking. They think that talking over me, to my carers, is acceptable instead of rude (as it would have been seen if I was able-bodied). It also seems to give people the right to assess my condition and disabilities and decide if I actually need the wheelchair, or if I am I just a lazy faker.

I’m still a person. Don’t treat me as less just because I’m in a wheelchair. Just treat me as if you were talking to a real person. Which I am.

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